Low Platelets

[GirlfromTennessee]

Is having Low Platelets Normal for APS Patients? Mine is reading 126k/ul & the norm is 140-400k/ul.

Also my Lymphocytes are 8.60 & norm are 18-40

How do these # affect your well being or are these pretty normal stats with APS?

[Lure2]

I reread what you had asked before and I see you do not have a Specialist. You must have a Specialist who understands you need to do parallelltesting as the vein-INR is the only correct messure of the INR. A selftesing machine should only be used as a suplement at home and can be used more often.

Properly thinned blood have a HIGH INR. I can be difficult to learn about the INR and the dose of Warfarin and also the greens as they will always lower the INR and make your blood thicker. Usually the vein-blood at a lab gives a lower INR compared to the Selftest-machine at home, but that is the only correct value!

Write EVERYTHING down! Also get a Specialist of autoimmun illnesses who is knowledable of APS as he works with those people every day!

[GirlfromTennessee in reply to Lure2]

Yes Sad our Dr’s know very little about APS

[HollyHeski Administrator]

As Lure2 says, you really need a APS specialist to interpret any blood results.

We are not medically trained and can't advise you on your results.

For me, my results can vary with many factors coming into the equation, so I rely totally on my consultant to answer my queries.

If you haven't got a specialist please go and talk through with the doctor that requested the tests.

[MaryF Administrator]

Hi, this does happen with some with Hughes Syndrome/APS, my late father had this alongside our condition. I enclose a paper for you:

intechopen.com/books/thromb...

It is best for yourself and your GP, to have the support and guidance of a specialist who understands fully, Hughes Syndrome/APS and it's associated conditions. MaryF

[GirlfromTennessee in reply to MaryF]

Thank You Mary, I appreciate any & all Info!!

[KellyInTexas Administrator]

I had life threatening ITP ( purpura) at 18 months old- a baby. This was in 1971 in Ft Worth Texas.

My Hematologist now believes I was actually simultaneously clotting - because I was so critical. High dose steroids were administered. I was too critical to undergo removal of spleen, as that was what was needed.

After 6 weekend of steroids, I did much better. My Hematologist now thinks this helped the micro clotting in organs.

I was down to 3,000-5,000 if I remember correctly.

It is not uncommon to have total WBC go low- I run about 3.5-3.8

The breakdown of specifics of the wbc do need to be checked . ( mine are very off the mark now because I’m being treated with Rituximab.)

I know how difficult it is to find an APS specialist.

Is your Hematologist well versed in APS?

I’ve found my San Antonio team is not on any specialist list, but my Rheumatoligist is very good, - I would not say he devotes 1/2 of his practice to APS exclusively. My understanding is that’s what defines a specialist. I don’t know if we will ever be able to pinpoint that number here with such precision. I think as long as I have a multi disciplinary team here that work well together and between them they have combined experience with APS , that may the best care we receive. Just be diligent to follow through with staff that notes are getting copied to each doctor from the other.

It’s the lone rangers who are unwilling to grow or listen who worry me, and have proven to cause me tremendous harm. ( they tend to see APS as slightly more problematic than A- fib, but treat it the same none the less.)

Have you looked into U of Vanderbilt?

[GirlfromTennessee in reply to KellyInTexas]

No I haven’t. None of my Drs are up on our Disease. They all started out strong but now it’s like ‘well you are stable & we are not gonna rock the boat’ ?!?! I started having major skin issues & I didn’t even have acne in my teenage years, but any complaints like the skin issues, fatigue, headaches, neuro issues. It’s like it’s a normal thing because I’m getting older!! I have to remind them about APS & sometimes the light goes off & it’s like oh yea... she has this auto immune disease. It’s so frustrating!!! Medical is so expensive, I would have to be referred for a reason or my Insurance would not cover me & Im not for sure that any of my Drs see the need. 😢 but then low platelets fo scare me tho.

[GirlfromTennessee]

Kelly, had mention seeing a Doctor at Vanderbilt. Has anyone seen a Good APS Doctor there or know someone that could give a Good reference on a Doctor at Vandy?

[Lure2 in reply to GirlfromTennessee]

You should listen to Kelly in Texas who knows a lot about different Specialists in the US.

I am so glad that you are looking for a Specialist of autoimmun illnesses who works with people like us now! You will see later on how important it was.

[KellyInTexas Administrator in reply to GirlfromTennessee]

You put up a post last year titled , “Pain Meds.”

Cindywtj stated the following:

“Dr.Susan Fey Kroop at Vanderbilt has excellent references from others on here.”

Hopefully she is still there, and takes your ins.

[kiminabmw]

Was your Hemoglobin checked with the blood test results showing your low platelets? If yes, was your Hemoglobin in the normal range, or was it low as well?

[GirlfromTennessee]

It was 13.5

[kiminabmw in reply to GirlfromTennessee]

That is a good Hemoglobin. The only reason I asked was every time my nephews lungs hemorrhage, his platelets drop but his hemoglobin drops a lot also.